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Chiari Malformation - I feel scared & alone..

Posted , 13 users are following.

livvy_smiles
livvy_smiles

Hello

i thought i'd join this site as i am desperate for help and advice, i know nobody who understands how i'm feeling sad

Here is my story:

I am 23 years old and i was diagnosed with Chiari malformation Type 1 about 8 months ago, before the diagnoses i was having panic attacks all day and everyday as i didnt know what the symptoms were and it felt like i was dying, and i also thought i was losing my mind, like literally thought id have to be thrown into a mental hospital and sectioned it got that bad.

My symptoms include:

Terrible vertigo

Numbness

Sleep paralysis

Sleep apnea ( i havent been diagnosed with this yet, i am getting it looked at)

i have not handled the situation well, i just want to feel normal and live a happy & healthy life.

How i have handled the diagnoses has altered my perspective and thinking patterns in a really negative way, it keeps me up at night and i am terrified.

I apparently don't need the surgery.

I just want to know, is there anyone else who feels this makes them so much more afraid to live, yet also afraid to die, it has intensified those anxieties for me sad

Please please please.. i need to know - can i still live a happy & long life with chiari? i feel like i am going to die and i dont want to sad i cant take it anymore.

What do you do to improve your life with chiari?

How do you see the positive side of it all?

Next week i am flying to greece with my best friend, i am excited, but also scared, scared because of the pressure on the plane.. will it cause damage to my condition? and also because i dont want to be a burden if i feel tired and dizzy.

I just want happiness.. i feel like i wont have that with any of this.

i am losing it :'( 

2 years ago i had lost my boyfriend due to an overdose, these past few years have been awful for me, the diagnoses only made it all worse.

thankyou.

0 likes, 25 replies

25 Replies

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  • gabby80509
    gabby80509 livvy_smiles

    Posted

    Livvy

    You will be fine. You have come to a great group with lots of caring supportive people. You will need to find a good neurologist and see what theu say is best. There are meds to help and if need be surgery. Yes you can live a long wonderful life..with proper medical help.

    Its very difficult..and effects us all differently..no two chiarians are alike...but we all understand.

    We are here for you.. vent all you need too.

    I hope you find the help you need. Where do you live??

    Gabby

    • gabby80509
      gabby80509 livvy_smiles

      Posted

      I suggest you talk to your dr. Or gooogle research drs there for chiari

      I dont know any..i was in the US when i had my surgery. Im in Israel now and having to find drs here as im having symptoms again..7 yrs post op. It doesnt happen for everyone..it can.

      Hugs..i pray you will be well soon

      Gabby

    • livvy_smiles
      livvy_smiles gabby80509

      Posted

      Yeah i will give it a go, my neuro is really kind but i havent asked him how much he knows about it all, all our appointments have been very short.. and he has told me not to worry i do. Thankyou so much for your response *hug* i pray you will be well soon too, best of luck xx
  • whodatbritchick
    whodatbritchick livvy_smiles

    Posted

    I am so sorry you are going through this.  My daughter was 17 when she was diagnosed with chiari, I'm not sure what type it was.  She had your symptoms, except the sleep problems.  It got to a point where she couldn't function, we didn't know what was wrong with her and went to see a doctor, after an MRI he suggested a neurosurgeon because he thought she had a chiari (I must have googled everything on chiari).  The neurosurgeon confirmed the diagnosis and advised surgery so we went ahead and she had the surgery.  Some of her symptoms have gone, she still has the numbness and has headaches, not as bad as they were and ibuprophen takes caare of them.  I would advise going back to your doctor and asking him for a referral to a neurosurgen.  Are you living in the UK? I am an expat living in America now so it was easier for my daughter.  I would insist on a referral.  I got to this site because I wanted to find out more on what my daughter was going through.  It's a good site with a lot of support.  
    • livvy_smiles
      livvy_smiles whodatbritchick

      Posted

      Bless her sad is she on any medications at all? yes i am in the UK, My neuro said that my chiari wasnt bad enough to resort to surgery, maybe in future i dont know.. i am on beta blockers to prevent migraines and ease the vertigo, though it only works sometimes
    • gabby80509
      gabby80509 livvy_smiles

      Posted

      Ask him to change your meds to find out what works best for you..till you get some relief.
    • Blueclouds
      Blueclouds whodatbritchick

      Posted

      Hello, I've been dealing with Chairi for about 7 months now. I'm 16 and I saw your daughters case seems a lot like mine. I'm just hopeless and feeling more lonely then ever, I can't do sports and I don't have friends. Chiari has prevented me from a lot and I was wondering how your daughter got through? My surgery dates coming up in 4 months but I just don't know what to do.

  • yeltzer
    yeltzer livvy_smiles

    Posted

    Hello Livvy and welcome to the band of CMs. First off your Neuro? is that a neurologist or neurosurgeon? If its a neurologist ask to be refered to a Neurosurgeon, they understand CM better. The plane is alright and you should feel nothing. Actually relaxing in the sun will do you the world of good and take your mind off the condition, but don't get up to anything too strenuous {lol}. One of the symptoms of CM is depression and anxiety, realise that and treat it like any  other symptom, you can't help feeling that way. Its not you but the CM. By the way there are many different symptoms for CM and not everyone gets the same symptoms, (there was a lady in the USA that had 49 symptoms recorded} If you feel tired or dizzy relax your on holiday. Best of luck,

    (kalí týchi in Greek) We're thinkin of you tell us how you got on.

    • livvy_smiles
      livvy_smiles yeltzer

      Posted

      Thankyou that does make me feel more calmer to fly, i fear flying to begin with and its the first time traveling abroad independantly without a parent figure which really scares me lol, but i have to face my fears right? ahh yeah im deffo gonna take it easy on the partying and alcohol lol but i'd still like to have some fun you know? especially with my bestfriend as she'll be leaving soon for Uni and i wont get to see her as much. Thankyou so much for your response <3>
  • Cakegeek
    Cakegeek livvy_smiles

    Posted

    Hi livvy smiles,

    I'm in the UK and suffer we some of the same symptoms, apart from the sleep issues.

    I understand how you feel afraid to live, afraid to die. I'm currently struggling massively at the moment with anxiety due to it all. I'm coping by talking to friends, they don't necessarily understand what I'm going through but one of them suffers with chronic pain so can relate to somethings.

    I often feel like I'm going mad with it and just want it to end. But one thing I've realised is I need to take time, time to accept this and accept the change in myself, take time to grieve for the things you've lost, even the smallest of things and take care of yourself.

    Have you seen a neurologist or neurosurgeon? Neurosurgeons seem to be better educated.

    I have been told i'll be having surgery at the end of the year, and that in itself brings new anxieties.

    Know that you are not alone and we are all here to support you.

    Hope you can find happiness.

    XXX

    • livvy_smiles
      livvy_smiles Cakegeek

      Posted

      Thankyou so much <3 i think i just havent accepted it fully yet.. i did for a while until new problems started to arise which caused me to worry all over again, i think he is just a neurologist so i will look into talking to an actual neurosurgeon xxx i="" think="" i="" just="" havent="" accepted="" it="" fully="" yet..="" i="" did="" for="" a="" while="" until="" new="" problems="" started="" to="" arise="" which="" caused="" me="" to="" worry="" all="" over="" again,="" i="" think="" he="" is="" just="" a="" neurologist="" so="" i="" will="" look="" into="" talking="" to="" an="" actual="" neurosurgeon="">
    • Cakegeek
      Cakegeek livvy_smiles

      Posted

      I think its a cycle; you think you've accepted and come to terms with and then bam, a new symptoms, an appointment or just a bad day and it's feels like we're back to square one, emotionally, mentally and physically.

      Just keep talking and stay strong.

      XXX

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